A place for couples dealing with illness to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.
The information provided in this blog is for educational and support purposes only. It should not be used as a substitute for seeking professional care.

Wednesday, March 25, 2009

The Harm of Omission

This is not a post about couples and illness. As you may know, I often contribute to Grand Rounds, which is a collection of the week's best posts from the health care blogosphere. Each week, Grand Rounds is hosted by a different blog. This week's host is Paul Levy of Running a Hospital. Paul is CEO of a large hospital in Boston and has challenged us to write about "When things go awry." He is asking patients who have been the victim of clinical harm to relate their personal stories, tell how your provider(s) responded, and how the event has changed your view of the practice of medicine and what advice you would give to the profession. I found this topic to be so compelling that this post is a response to Paul's challenge.-----------------------------------------------------------------------------------------------

The Harm of Omission

There is harm of commission and harm of omission. I actually prefer the former. At least you can see it, name it, fight it, and point at it while demanding retribution. Harm of omission lives in the shadows. It creates shivers in the fog but doesn't come right out and trip you. Its very greyness makes it much harder to prove that harm happened -- both to yourself and to others.

As a patient lurching down the formidable halls of the health care system trying to get help for a mysterious, debilitating pain condition I was never the victim of harm by commission. No doctor or clinician ever removed a healthy kidney or hooked my IV up to the wrong bag. My medication doses had the decimal point in the right place. I was never given 25 mgs. instead of .25mgs. And, maybe because I'm white, middle class, professional, English speaking, with good health insurance, I was never dissed or dismissed by being told that my pain is all in my head.

But the harm of omission I experienced was grievous and insidious. It took a long time to recognize its existence and impact. And there is no one to blame.

The harm of omission lives at the core of the structure of our health care system. It is that there is really no organizing structure. There are separate disciplines each with its own language, expertise, methods, values, and staff. The highly trained specialists who live within the blue discipline look at a patient through the narrow opening of their unique lens and see only the blue dots that pertain to their piece of the patient puzzle. The orange specialists, the green ones, the purple ones all look through their own limited scopes and see the dots that fit within their sphere of experience.

But patients are not constellations of disparate dots. We are whole, integrated palettes. When the system does not enable clinicians to weave the dots together into patterns, patients fall through the holes and break. This is the serious harm of omission.

Initially, my fantasy about the health care system was that a team of specialists would converge on my case like a pack of predators, and would chew over every bit of data until what finally emerged was the answer. In my fantasy, I would be guided from test to test in a systematic, coordinated manner. I would be directed to higher levels of expertise when lower levels were baffled. I believed that managed care meant that someone, some pack of experts, would swarm over my case to share information and collaborate to manage my care.

None of this ever happened. The specialists I was referred to were the ones who happened to be buddies of the referring doctor. My test results stayed locked inside each health care center's files and were not accessible to specialists outside that system. Even specialists within the same system did not often look at each others reports. And most disappointing was that after each specialist determined that my condition didn't belong inside his/her purview, I got dropped.

One head of neurology after seeing my normal brain MRI told me he had done all he could for me and suggested I might want to try exercising more. A chief orthopedist declared my spine and its asymmetries to be within normal, middle-aged ranges with nothing pinched enough to produce the degree of pain I was having. He told me he enjoyed meeting me and left. By the way, my primary care doctor was compassionate, available, and very helpful. But even he could not make a whole safety net out of all the disparate threads that constituted my care.

I was a slow learner and did not want to give up this sweet fantasy so it took me over a year to realize that for the health care system, managed care meant managing the money around my care, not shepherding me. I finally got it that I would have to be the manager of my own care and the one to connect the dots -- to find the great specialists wherever they may be, to keep my own case record, to be the information bridge between providers, to advocate for care within a system whose rules and knowledge were foreign to me -- and to accomplish all this as a patient in pain.

Imagine if a homeowner were given fifteen minute consultations with an architect, a painter, a carpenter, an electrician, and a plumber and was then expected to organize the renovating of his home.

To have the weakest and least knowledgeable be the leader in a crucial period is a plan that's heading for danger.

The system, through omission dropped me. I did break. For a year I had uncoordinated, disconnected care from multiple providers in different disciplines with no one holding all the information or the accountability. One doctor would recommend I start a new medication while another would recommend that I increase the dosage of the meds I was taking. One doctor would refer me for an MRI at her hospital while all my other MRIs were housed at another hospital. I had a year of living with severe pain that could have been addressed with greater expediency had the health care system been a system designed for the patient.

While this realization busted my fantasy, it has made me a wiser patient. I now don't expect patient-centric teamwork. I don't expect the system to be proactive on my behalf. I don't even expect practitioners to have accurate information about my history. I advise fellow patients to take responsibility for managing their own care. This includes keeping your own case record with copies of all test results; using the internet to become a lay expert on your condition and medications; searching to find the great specialists; asking your providers questions about your options and the risks involved; saying, No thanks," and moving on.

Ideally, I would advise the health care system to minister to itself. To become collaborative, team-based, and knowledge-sharing. Electronic medical records can help concentrate information, but that will not change habitual patterns of behavior and create cross-boundary collaboration. I want the system to rebuild itself around the patient as customer instead of the patient as recipient. To provide a concierge for patients who come with lots of dots, those who don't fit into a single discipline and have complex health issues. To include the patient in conversations about becoming more patient-centric, patient empowering, and creating the "medical home."

However, until this new model becomes a reality, in order for other patients not to suffer the harm of omission and to waste precious time pinging around a broken system, the current system could teach patients how to manage their own care. How to be empowered patients in a system that does not yet give them power. How to be advocates for themselves in a system that too often equates self advocacy with being difficult, and questioning recommendations with being non-compliant. The current system and its inhabitants could teach patients new rules for getting what you need in a broken system.

Would this stress the current already stressed health care system? Yes, of course. But ask yourself, who is better able to bear the extra weight - the system whose mandate is to heal patients, or the patient who is counting on the system for that healing?

As a mother of two disabled children, I have come to the understanding that I am the one who must coordinate their care and solve medical mysteries. After suffering for months, possibly years, my daughter was recently diagnosed with fibromyalgia. This was after her GP, endocrinologist, psychiatrist and neurologist came up empty. My own GP suggested calling a rheumatologist. She was diagnosed on her first office visit and is being treated. Just knowing what it is provides its own form of relief.

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About Me

In November, 1999 I was whacked with a mysterious chronic pain syndrome that took me out of my life. With the help of my husband, my dog, and a combination of western and alternative approaches, I have a new life that includes working, writing, mountain climbing, smiling, and managing pain. I learned a lot along the way, especially about illness and the couple relationship. I'm also a psychotherapist, a business consultant, and have written a book about couples and illness, which was published in March 2013 (Roundtree Press)

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”Susan Sontag